Ambivalente Praxen der (Re-)Produktion : Fürsorge, Bioökonomie und Geschlecht in der Lebendorganspende

Frauen spenden wesentlich häufiger Organe, während Männer häufiger Organe empfangen. Wie sich dieses Geschlechterverhältnis in der Lebendorganspende begründet, ist bisher wenig erforscht. Ziel des Beitrags bildet die Entwicklung einer Genderperspektive auf die Lebendorganspende. Unsere These lautet, dass Lebendorganspenden eine ambivalente und vergeschlechtlichte Praxis der (Re-)Produktion darstellen. Mit Rückgriff auf Marx und seine geschlechtersoziologischen Kritiken sowie anknüpfend an bioökonomische Arbeiten erarbeiten wir ein doppeltes Verständnis von (Re-)Produktion als Selbstund Fürsorge und als eine (Wieder-)Herstellung von Lebensprozessen. Auf der Basis von qualitativen Interviews wird rekonstruiert, wie Betroffene einer Lebendorganspende auf (Re-)Produktion Bezug nehmen. Eine Lebendorganspende umfasst nicht nur den singulären Akt der Transplantation, so unser Fazit, sondern bildet eine Herausforderung für das Verhältnis von Körper, Arbeit und Leben aller Beteiligten.Ambivalent practices of (re)production. Care, bioeconomy and gender in living organ donation Women are more likely to donate organs, while men are more likely to receive organs. So far, little research has been done into the reason for this gender disparity in regard to living organ donation. This article aims to develop a gender perspective on living organ donation. We argue that living organ donation should be understood as an ambivalent and gendered practice of (re)production. Based on Marx, feminist criticisms on his work and bioeconomic studies, we develop a dual understanding of (re)production as a form of care and (re)building of life processes. Based on qualitative interviews we reconstruct how the involved living organ donors relate to (re)production. We conclude that living organ donation should not be limited to the individual act of transplantation, but should be understood as a challenge for the relationship between the body, work and life of all those involved

Ambivalente Praxen der (Re-)Produktion: Fürsorge, Bioökonomie und Geschlecht in der Lebendorganspende

"Frauen spenden wesentlich häufiger Organe, während Männer häufiger Organe empfangen. Wie sich dieses Geschlechterverhältnis in der Lebendorganspende begründet, ist bisher wenig erforscht. Ziel des Beitrags bildet die Entwicklung einer Genderperspektive auf die Lebendorganspende. Unsere These lautet, dass Lebendorganspenden eine ambivalente und vergeschlechtlichte Praxis der (Re)Produktion darstellen. Mit Rückgriff auf Marx und seine geschlechtersoziologischen Kritiken sowie anknüpfend an bioökonomische Arbeiten erarbeiten die Autorinnen ein doppeltes Verständnis von (Re-)Produktion als Selbst- und Fürsorge und als eine (Wieder-)Herstellung von Lebensprozessen. Auf der Basis von qualitativen Interviews wird rekonstruiert, wie Betroffene einer Lebendorganspende auf (Re-)Produktion Bezug nehmen. Eine Lebendorganspende umfasst nicht nur den singulären Akt der Transplantation, so unser Fazit, sondern bildet eine Herausforderung für das Verhältnis von Körper, Arbeit und Leben aller Beteiligten." (Autorenreferat)"Women are more likely to donate organs, while men are more likely to receive organs. So far, little research has been done into the reason for this gender disparity in regard to living organ donation. This article aims to develop a gender perspective on living organ donation. The authoresses argue that living organ donation should be understood as an ambivalent and gendered practice of (re)production. Based on Marx, feminist criticisms on his work and bioeconomic studies, they develop a dual understanding of (re)production as a form of care and (re)building of life processes. Based on qualitative interviews they reconstruct how the involved living organ donors relate to (re)production. The authoresses conclude that living organ donation should not be limited to the individual act of transplantation, but should be understood as a challenge for the relationship between the body, work and life of all those involved." (author's abstract

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

The interpretation of genetic information in clinical settings raises moral issues about adequate risk communication and individual responsibility about one’s health behavior. However, it is not well-known what role numeric probabilities and/or the conception of disease and genetics play in the lay understanding of predictive genetic diagnostics. This is an important question because lay understanding of genetic risk information might have particular implications for self-responsibility of the patients.Aim: Analysis of lay attitudes and risk perceptions of German lay people on genetic testing with a special focus on how they deal with the numerical information.Methods: We conducted and analyzed seven focus group discussions (FG) with lay people (n = 43).Results: Our participants showed a positive attitude toward predictive genetic testing. We identified four main topics: (1) Anumeric risk instead of statistical information; (2) Treatment options as a factor for risk evaluation; (3) Epistemic and aleatory uncertainty as moral criticism; (4) Ambivalence as a sign of uncertainty.Conclusion: For lay people, risk information, including the statistical numeric part, is perceived as highly normatively charged, often as an emotionally significant threat. It seems necessary to provide lay people with a deeper understanding of risk information and of the limitations of genetic knowledge with respect to one’s own health responsibility

Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer’s disease : a qualitative study

Background: There is increasing research focus on prediction and prevention of rheumatoid arthritis (RA). Information about risk of RA is increasingly available via direct-to-consumer testing. However, there is limited understanding of public perceptions around predictive testing for RA. This study explores public perceptions of predictive testing for RA in comparison to breast cancer (BC) and early-onset Alzheimer’s disease (AD). Methods: Four focus groups with 21 members of the public were conducted using hypothetical vignettes about predictive testing for each disease. Transcripts of focus group proceedings were analysed inductively using thematic analysis. Results: Thematic analysis of the data produced three key themes: decision-making factors, consequences, and consumer needs. Factors suggested that might influence decision-making about predictive testing included family history, fear, and perceived severity and treatability of the illness. RA was perceived to be less severe and more treatable than BC/AD. Potential consequences of predictive testing across all diseases included lifestyle modification, planning for the future and discrimination by employers or insurers. Predictive testing for RA was perceived to have less potential for negative psychological consequences than other diseases. Participants highlighted that individuals undertaking predictive testing should be signposted to appropriate support services and receive information on the accuracy of predictive testing. It was suggested that strategies to mitigate concerns regarding communication and confidentiality of risk results are required. Conclusions: The findings of this study reflect public misunderstandings regarding RA that may impact the uptake of and responses to predictive testing, and key informational needs of individuals considering a predictive test. Predictive strategies should be accompanied by awareness-raising initiatives and informational resources

Public knowledge and attitudes towards consent policies for organ donation in Europe: a systematic review

Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe. Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing either knowledge or attitudes towards the systems of consent for deceased organ donation by lay people in Europe, including students. Study selection, data extraction, and quality assessment were conducted by two or more reviewers independently. Findings: Awareness of the consent model was lower in opt-out countries than in opt-in countries. A majority of the public agrees with opt-in, regardless of the law in their own country. There are ambivalent attitudes regarding the opt-out system. The public tend to prefer opt-in and mandatory choice over opt-out when several options are offered. Interpretation: The assumption that people in opt-out countries are aware of the legal requirements to be excluded from the pool of potential donors is not supported by the results of this review. This is a concern, since ignorance hinders people's autonomy regarding organ donation decision-making. Higher awareness of consent model in opt-in countries may reflect greater efforts to inform the public through campaigns to motivate donation. Legal moves towards opt-out are at odds with people's expressed preferences. Main limitations of this review are the lack of data from some countries, study population heterogeneity, and methodological shortcomings

Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection were performed by two or more independent reviewers for each record. Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation

Self-determination in Living Organ Donation: an Empirically Informed Contribution to Ethical Issues in Decision Making

Living organ donation has become a routinized procedure in transplantation medicine in Germany. Despite the existence of a normative-legal framework ethical questions concerning self-determined decisions remain unanswered. This article, based on a qualitative socio-empirical study, addresses how family decisions are made concerning living organ donation and to which extent internal and external constraints affecting the voluntary nature of this decision are found among the interviewed people. The analysis revealed that the central decision for living organ donation was made in the context of the family. The decision was thereby decisively encouraged by the donors, the recipients, on the other hand, were rather passive in the decision-making process. Especially among the organ recipients no purely autonomous decision took place. The empirical results, which will be presented in a first step, provide the framework for the medical ethical recommendations regarding living organ donation in Germany developed in a second step.La donación de órganos de vivo se ha convertido en un procedimiento rutinario de la medicina de trasplantes en Alemania. A pesar de la existencia de un marco normativo-legal, algunas preguntas éticas relacionadas con la auto-determinación de las decisiones siguen sin contestar. Este artículo, que se basa en un estudio socio-empírico cualitativo, se centra en cómo las decisiones familiares son tomadas en relación con la donación de órganos de vivo y hasta qué punto las personas entrevistadas son sometidas a presiones internas y externas que afectan al carácter voluntario de esta decisión. El análisis muestra que la decisión central para la donación de órganos de vivo se toma en el contexto familiar. La decisión es promovida principalmente por el donante, mientras que el receptor permanece relativamente pasivo en el proceso de toma de decisión. Entre los receptores de órganos, la decisión no es totalmente autónoma. Los resultados empíricos presentados en la primera parte sirven como marco para las recomendaciones éticas acerca de la donación de vivo en Alemania que serán desarrolladas en la segunda parte

Nursing ethics and the mandate of care : current limits using the example of inpatient care for the elderly

The central guiding ethical principles of professional care are dignity, care, justice, and respect. The current framework conditions and circumstances in the care of the elderly mean that professional care ethics are no longer feasible in many cases. This leads not only to enormous (moral) burdens among the nursing staff, but also to a comprehensive degree to professional dissatisfaction and to leaving the profession. The term “Pflexit” (based on the German word “Pflege” = care) was first raised during the corona pandemic and has not faded. In order to ensure ethically justified and dignified care for the elderly that is also oriented towards human rights, as is conveyed politically in charters and rightly expected by people in need of care, rapid and comprehensive social and political intervention is required. In this context, dignity and respect are also a social mandate. Dignified professional care based on ethical values can only be implemented if nurses are shown this same respect. The clear warnings of a “nursing climate crisis” must finally be followed by action to stop the exodus from the profession. In this discussion paper, the importance of a professional care ethic is first explained. In a second step, the framework and current problems that oppose a comprehensive implementation of core values in nursing care for the elderly are highlighted. The focus here is on the effects of the precarious personnel situation.PeerReviewe